Tuesday, June 30, 2009

The funeral service for Pablo will be held at noon on Wednesday, July 1st, at Forest Lawn Hollywood Hills cemetery, Old North Church, 6300 Forest Lawn Drive, Los Angeles, CA 90068. As with Tuesday's celebration, Jeff, Jo Ann, and Grady invite everyone to come, and to bring their entire family.

Monday, June 29, 2009

Our lives today are so full of family and friends and love and laughter. And in between sobs and darkness. And then the sun comes around again and all is OK. Until one of us—somewhere across the house—falls into a weep or a cry or drifts ever so softly into a spell of Pablo memory. And then, elsewhere in the house, laughter (usually Jo Ann's) fills the house again.

This is our lives, today. We accept it. We are on a roller coaster. It's not the same one we've been on for the past 13 months. It's the one right next door.

Me, I can't shake wondering if Pablo was lonely as his soul and spirit started to tear itself out of that body of his, that shell that the spirit utilized for six years and six days. Or if P felt like, 'What the heck's going on here? Are these guys letting me go somewhere scary all alone?' But that's only when I start to drift. The answer to this question is: there is no answer. The only way to know is when you go. And when you go, you will no longer need to know.

Today, we went to Forest Lawn and picked out a final resting place for Pablo. We got enough room for our whole family to be buried with him. Jo Ann homed in on this spot with absolute clarity. She stood there and pointed out all the wonderful things about it. Then we all sat down and meditated on the site. And we all agreed: it was perfect for Pablo.

With that sorted, we picked out Pablo's casket and sorted out all the details. We did all of this with help and support and loving hand holding from Peter and Brie, Dean, and our amazing friends Rachel and Clint Lukens. It's amazing how friendships propel us through life: if it weren't for Rachel, I'd still be living in Milwaukee, and there would be no Pablo.

You'll see the fruit of today's loving labors at the funeral on Wednesday. We know you'll love it all as much as we do. Pablo's grave site has a panoramic view of the mountains above Burbank and Glendale. You can see it perfectly from Trash Truck Hill, the Griffith Park road me and my friends ride up all the time. And it's right under a young tree. There's a wall a few feet away—perfect for P to do Geronimo! jumps off of ANY time he wants. And there's plenty of places to hide and play. Jo Ann

Oh, and after we left, Jo Ann realized Pablo's grave is in—get this!—Lincoln terrace. As in Abraham Lincoln. There's a huge statue of him about 40 yards away. So Pablo can compare notes on top hats with the O.G. top hatter for years to come....

We are sooooooo looking forward to CELEBRATING PABLO with you all tomorrow. The memorial starts at 5:30 p.m. at Descanso Gardens in La Canada. We want to shoot light so bright into the sky for our heroic little boy. Bring your family, your children, your hearts and your glasses. We have some amazing Pablo visuals for you, a little live music, of course, plenty of speakers to re-illustrate Pablo's life. The evening will be hosted by Harry Moffett's dad Don.

Join us Tuesday, June 30, to celebrate Pablo and the brilliant light of his spirit. Please bring your children, families, and loved ones. We invite anyone and everyone who has felt touched by our inspiring little boy to join us. All are welcome. The memorial will be held at 5:30 pm, at Descanso Gardens, Van de Kamp Hall, 1418 Descanso Drive, La Canada Flintridge, CA 91011.

A family friend of Pablo's friend Cynthia lit a candle in memory of P yesterday at the Duomo San Giovanni in Florence.

This image of LIGHT is a wonderful + powerful way to start today, the second day of our living with + looking for + witnessing Pablo's spiritual self. The second day since his spirit had to leave his physical body.

The vivid, powerful light coming off those candles reminds us of the energy + happiness + passion that Pablo exuded every day.

Pablo's best friend in the world, Harry Moffett, said it best when his parents told him of Pablo's passing:

"I am so sad Mommy. He has gone back to his star and I will see him there."

Sunday, June 28, 2009

Our biker gang.... Heading out for a look at the place Pablo's physical body will call home....

It was magic hour—that special time in the hour or so before sunset when the sky is beautiful orange and the sun isn't quite as hot and intense as it is in the afternoon. Photographers and filmmakers make great use of this time of day in LA. I guess they're the ones who named in magic hour.

Tonight, the magic was all Pablo's. It led the way for a gang of us who hopped on bikes and rode through Griffith Park. Grady, Peter, Fred, Dean and I were headed to a climb that's known as Trash Truck Hill. We were on a mission to a road I know and love, a road so high up in the park, cars are not allowed. I told Pablo millions of stories about my climbs on this steep road—about how steep it is, about all the animals I'd see up there, and about the gorgeous view of the city.

The exact piece of road we were after was the bit that sits above Forest Lawn Cemetery. In the past year, I'd averted my eyes whenever I rode by the cemetery. This morning, I asked Peter if he wanted to ride up there—for the express purpose of pulling over and looking down on that vast swath of land on the back side of Griffith Park.

It was wonderful. It felt right. We all felt Pablo. Grady told me he thought of Pablo all the way up the steep climb and that it propelled him. Tonight was a real moment of clarity for Grady. I am proud of him. Losing Pablo has set Grady's life on a course. He knows it. He talked about it all the way down the hill. I could hear him talk about it all night. I'll let Grady tell you the rest.

While we were looking down at the cemetery, we saw three deer standing perfectly still in the green grass of the graveyard. I have always known that seeing deer is good luck—a sign of life. Please post a comment if you know the exact significance of this, so we know. At the start of the climb, I was about to mention to Peter that any sight of deer would be fantastic. Something distracted me, and I never said it. Doesn't matter. It happened.

After the deer, we stood in a circle, and did a standing meditation. My favorite kind of meditation. As we opened our eyes, half of the sun was already behind the western mountains. We stood there, and before our eyes, the sun dropped out of sight.

The glow, the purity, the hide + seek. It was our first Pablo sighting.... Or was it our tenth?

Hi everyone, Hrishikesh here, posting briefly. Plans for a memorial service—a celebration of Pablo's life—are underway, but the venue has not yet been confirmed. We're planning on it happening Tuesday evening, with the funeral the next morning at Forest Lawn. Please check back tomorrow for confirmation and more details. The outpouring of love that has been sent to Jeff, Jo Ann, and Grady has been reverberating throughout the house; it is deeply felt. Thank you.

We walked down the hall and laid in his bed and stared out the window and at his beloved library and his toys and hats and capes and the art on his walls and held one another and wept and talked and remembered and reaffirmed our beliefs in all that is seen and unseen and our faith in us.

Saturday, June 27, 2009

Grady and I—and Pablo's empty saddle—riding around the Silverlake Reservoir this evening. It's hard to see in this pic, but I am also wearing Pablo's 'Mike and the Bike' helmet.

Early this evening, we rode in honor of Pablo. I rode the 'connect bike' that P and I ride all the time. His saddle is symbolically empty. Now I will ride alone, with Pablo guiding me and watching over me. And so will Grady. We plan to do Reservoir rides regularly, and I will ride with Pablo's connect bike on all those rides.

Grady and I were joined by Polly, Peter, Dean, Tony, Acacia and our lovely and sage neighbor Laurence Frauman. It was a wonderful way to honor Pablo—doing something that he loved, something that we did a lot of in the last couple weeks of his life. When we passed Silverlake Park, we stopped and did Geronimo jumps off the granite wall, just as Pablo would have done if he were with us. I will post Peter and Tony's great pics of the jumps tomorrow when they email them to me.

Let me tell you what happened before the ride....

At around 6 p.m., Jo Ann, Grady and I carried our beloved little boy Pablo in our arms. We picked him up from our bed and we carried him up the stairs, out the door and into the waiting transport from Forest Lawn Cemetery. We took slow, deliberate steps. We carried him with dignity and care and love. How else could we do it? We were scared. And we knew were doing it the way Pablo would do it for any of us. Nobody ever sent us a road map, so we are making this part up as we go. And, so far, using dignity and love as our coordinates, we're doing alright.

Pablo's physical self laid in our bed all afternoon, receiving kisses, snuggles, and gentle caresses from us and our family and close friends who were at the house. We talked to him, as if he were still in that body. We believe that Pablo can hear us now, and that he is part of the Universe and that he is with us, in us, around us.... We also believe that Pablo is in Heaven, and that once he left the plane where we exist, he went to this higher place. While we spent our final hours with Pablo, Peter and Brie began making arrangements with Forest Lawn, where Pablo will be laid to rest next week. (We will host a giant memorial and celebration of Pablo's life; the next day will be the funeral. Details will be posted here late Monday). P + B did everything so that we could spend all our time with Pablo. A handful of other friends were here too, keeping things safe and sacred within our home while we wept, laughed, hugged, talked, reminisced, and continued telling Pablo that we love him and that he is a brave boy and that we will be OK. We told him these things a thousand times in his final days, hours and moments of life.

In fact, the second last thing Pablo said was 'Say something!' He said this because, for a brief moment, there was a lull in our telling him that he was going to be OK, that we love him, that it's OK for him to stop fighting and rest.... He just opened his eyes for a second, then screamed 'Say something!' What an amazing person. Even with his second last breath, he told us exactly what he wanted and needed. We love him even more for this.

I want to tell you what Pablo's last words were. Listen carefully, because this is the greatest testament to Jo Ann and her wonderful motherhood, and how wonderful motherhood can be with the right child and the right mother. Pablo's last words were 'I want Mommy!'

And her response, as always, was 'You've got me Pablo. I'm here.' He had been in her arms for hours when he said this. He would wake up from his Morphine-induced naps, and, we believe, he would wake up scared. And every time, he would scream the same thing: 'I want Mommy!'

Jo Ann is that kind of mother. That's why we love her. That's why Pablo knew he could call on her. She is his cornerstone of safety and warmth and all that is good in his life and in his world.

Now, the next step begins... And, so far, it is every bit the emotional roller coaster the past 13 months have been... Except it hurts in a much, much different way. With Pablo gone from our physical lives, and with his physical self no longer here, and the fight to keep him alive no longer here, it immediately feels like we are floating in space, dodging chunks of emotional asteroids. When I say 'dodging,' I don't mean avoiding. I mean getting hit with the full force of memories, Pablo's toys, clothes, pictures, videos, energy that cover every square inch of our house.

We have all wept and wept and wept. At one point I thought I was going to pass out. But this is the purpose of crying and weeping and letting go, isn't it? It's about clearing out. It's about finding the bottom and scrubbing it clean with the tears, the breath, the tornado of release. There is no doubt the sorrow and mourning and tears and gut-wrenching will go on for a long time. But there's also no doubt that our acceptance will grow and take on color and shape and dimension. We're nowhere near that today, of course. But we know that this is the promised land for a family who has lost a boy named Pablo who lived exactly six years and six days.

All these memories are wonderful things that, today, feels so so so bittersweet. No memory of Pablo could ever be painful for us. We want the memories, and his belongings, and his energy. We want to keep Pablo in our hearts and lives. There's no way this won't happen. No way. He was not the kind of dude whose light can be diminished. And we're not the kind of family that forgets.

We really do not know what tomorrow will bring. Or if we'll even be able to sleep tonight. Part of being hopeful, for us, meant that we would not dwell on what it would be like if we lost Pablo. I can't recall a single conversation Jo Ann and I had about this. So, tomorrow will be a new start. Am I scared? Hell yes. Do I want Pablo back? Oh my G, yes! But do we accept that God + the Universe had a different plan for our precious little boy Pablo? Hell yes. Simple as that.

We are so happy to be home, for our little boy to be home. All four of us slept in our bed last night - Grady, Jo Ann, Pablo and I.

We have a house full of family: Jo Ann's parents, my brother Dean, and two locals who spent the night just to be with us - Polly and Peter. It felt wonderful to have everyone here. Made me feel safe. This is love for Pablo in the highest order.

Pablo had his best night since this phase of his life began on Wednesday. He woke frequently, sucked entire glasses of water through a straw, and would then say, in his little voice, 'I'm tired, I want to go back to sleep now.' This happened at least four times.

He has not vomited any blood since we arrived at home last night. The oxygen tubes running into his nose are making up for what his body can no longer produce. A dozen times during the night, with the palms of his hands, Pablo rubbed his nose, his face, his ears. Each time, the oxygen tube would pop out of his nose. Sometimes it'd go into his mouth and make a big hissing sound. Other times it'd slide up to his forehead. Jo Ann and I took turns being on oxygen duty. We'd close our eyes when the other was on duty. Not sure we slept exactly, but closing our eyes helped.

Overall, Pablo's breathing is becoming more labored. His face is ashen. His abdomen pistons in and out pushing his breath as it can.

Even when Pablo is asleep, Jo Ann, Grady and I talk to Pablo. Many times when we think he's fully asleep, he answers or acknowleges us. We tell Pablo we love him ('I love you too,' he responds)... we are grateful that he chose us to be his family ('You're welcome')... everything he's feeling is perfectly OK... he has been so strong and it's OK to rest...

Friday, June 26, 2009

Grady is now here with us in room 435. He's snuggled next to his Mommy and his little brother. The boys are holding hands as they simultaneously saw logs. Grady's zonked cos he stayed up late writing his wonderful blog post. Pablo's zonked cos he's battling baffling forces inside his body - forces we simply do not understand.

What we understand here in room 435 is love. This image of our boys' hands intertwined is proof that we walk the walk.

Hospice care has been arranged. Our nurse will meet us around 6:30. She will hook up Pablo to the morphine drip and oxygen set up that will come home with us.

And then, for the last time, we will carry our most precious little boy out of this place. For the last time, we will drive him down Sunset Boulevard, and up into the Silverlake hills. For the last time, we will pull up in front of our home. And we will carry him to our bed, which is awaiting his arrival, having been arranged lovingly by Jo Ann's mom Patricia, and Polly.

Sitting on the most comfortable bed in the house, only eight years old, I knew what was going to be said to me. I could feel it, just didn't want to show it. My wonderful mom to the left of me rubbing my right shoulder and my step dad to the right of me rubbing my left shoulder, trying their best to seduce me to the grown up world for just several minutes. It worked.

Starting to talk in a nice calm voice they talked about random stories of their past to get me involved in the conversation. The words I wanted very much to hear, but scared to death to hear, then finally breached their lips. The words that made me think into the future through the good and the bad. I was going to be a big brother.

They decided not to tell me till three months after they knew, to make sure the baby was healthy. It was.

After finding out that it was going to be a boy, we scratched Lulu Louisiana off the list of names. Still not sure, we came up with about four names that could suit the little boy. Several months later I was holding my mom's Rolex, timing how long it was for the next contraction to start, then stop. Something that they will never drop for the rest of our lives happened that day…I broke the beautiful Rolex (sorry) running up the stairs while my mom was having contractions.

More importantly, my little brother was born that day. I didn't know if I should be excited or not. Is all the attention off me now?, I thought to myself. Shocked that there was another living being in the house I was scared what the rest of my childhood life would be like.

Coming home from the hospital, eating his first solid food, saying his first word, taking his first step, losing his first tooth - these are all mile markers in a little one's life. There could also be bad mile markers. Breaking a first bone, getting in his first fight, having to go in and out of a hospital for over a year. These are bad mile markers, but they are mile markers.

Having a brother that is nine years younger than you but still looks at you as if you are his age is one of the best feelings ever. 'Grady, can we please play some football on your bed? It's so fun. Or even some cabbage ball maybe, I just want to play.'

Hearing those words makes me feel important and a big influence. Sometimes I could be a bad influence but I try not to…. It's hard. Having a little buddy running by my side everywhere I go is amazing.

This all started May 17 2008, getting reading to go to Malo for an exciting night in the upstairs party room for Jeff's birthday dinner.

'Jo Ann! Come here!' Jeff screamed from the bathroom. 'What is this on Pablo's right side?'

'I don't know,' she responded. 'Should we take him to the doctor?'

Jeff and Pablo were in the tub when the 'bump' was discovered for the first time. After almost falling through a hole in the floor at Malo, it was decided that Pablo was to go to the hospital. I went home with Polly and sat by the phone. After many hours in the late hours of the night my mom called with a tone in her voice that sent shivers down my back when I heard her first word. She said Pablo has a tumor and...I didn't hear the rest. I threw the phone into the pillows and picked up my backpack in an attempt to swing it over my head and slam it onto my bed. Since gravity exists, the bag hit my head and made me five times more mad.

Needed to talk to somebody just to let it all out. I called my best friend, who I've known since kindergarten, Julio. I vented out to him over the phone in the backyard for almost an hour. I went inside and just cried and all these memories came through my head and made me cry more. I finally cried myself to sleep and that life-altering day came to an end for me.

Planning out the next six months of chemotherapy I didn't know what to think. Were those days of having fun over? Was I going to be lonely again? Was he going to be laid up in a bed? NO, NO and NO. There were some minor schedule setbacks in the FBF league (Fun Bedroom Football) but the games still continued. Until he wasn't allowed to play rough any more. The letters FBF stood no more. Pablo still came into my room trying to resurface the league but every time we got caught by the higher authority of the parents.

After some setbacks and some horrible news and some extremely good news then some more bad news and some good news and then some bad news and some ok news, at some point the good news comes in less often and with less impact. Then what? You're out of options? Feeling hopeless? Feeling like you can do more but don't know what to do? YES, YES and YES.

That is what is going on right now. The questions What does that mean? What now? And just plain out, Why? are running through our heads at every moment. We are trying to think.

Nothing but blanks are coming up. I don't know what to say. I never thought this far ahead into the future when the idea of having a little brother came into play. 90% of the time I'm with Pablo I'm smiling. In the last year 60% of the time I talk about Pablo I'm smiling.

Thursday, June 25, 2009

Pablo is sleeping. He's nuzzled up to Jo Ann's bosom, something he has done since the moment of his birth. To see Pablo and Jo Ann in this embrace is to see one of the beauties of human life. The mother gives the child life, then nurtures the child. through her breast, and the child returns for comfort, for solitude, for safety. The child returns to the life source. Makes sense.

Pablo has been in this position for over 24 hours. Once in a while he lets Mommy sneak out, and I jump in. Or Nana does. my usual position is to snuggle up behind him, creating a family cocoon. That's where I am now. I can't sleep, so I'm writing. That's what I do.

The nurses were kind enough to move the empty roommate bed where I slept last night next to Pablo's bed. Now we have a giant family bed, like we do at home, and we can be together as Pablo pushes his little lungs to do a job they were never meant to do: oxygenate his blood while one of the lungs is being strangled - nearly filled - by fluid.

Pablo's breathing is labored in the extreme. Laying next to him, he sounds mechanical, like gears grinding on an old car. His heart rate has been north of 150 for 24 hours. His heart has a lot of work to do to keep that system going with a troubled lung. By comparison, my heart rate is at 155-160 when I'm riding my bike at 20 m.p.h. on a flat road. And P's is that high when he's laying in bed. For sure, kids' hearts beat faster than adults, but not that much.

My head is spinning, so I'm not going to attempt to walk you through the medical details. The basics are: there's a massive amount of blood in the wrong places of Pablo's body. He lost an entire unit of blood in a 24 period. The origin of the blood can't be pin pointed, but it comes down to the tumor in the right lung growing massively or dying or eroding a blood vessel. The blood he vomited last night in the ER was the largest volume. Three smaller amounts came up today, the last of which was two hours ago.

Pablo is my best friend in the world. He is my son. He is Jo Ann's son. He is Grady's brother. He is a person who brings light and love to all who've ever met him, or spent time in the same room with him. He has lit our way since Jo Ann and I went to her doc's office and found out we were pregnant. Pablo is...a special kid. I love him so much that I can say without the slightest hesitation, I'd jump in front of a bus RIGHT NOW if it meant he'd be OK. I'd certainly shove his I.V. needle in my arm RIGHT NOW if I knew it'd cure him and kill me. F***. Those are no brainers. And they are great fantasies and nothing else.

The truth is, Pablo is dying.

There are no medical options left. Nothing can be done to better Pablo's condition without either causing further harm or simply putting us back at the same dim crossroads. Pablo's doctors never claim omniscience. When I asked them how much life Pablo may have left, the answers ranged from a couple days to a week. This internal bleeding stuff is irreversible and vicious.

Jo Ann and I have had a palliative care plan for a long time. Today is the day we had to enact it. The plan is simple: we want Pablo at home in his final stage of life. This afternoon, we sat down with Grady and told him the details of Pablo's condition. As a family, we decided to enact the home / hospice plan. It was the hardest thing I've ever been involved in. Yet it was so simple. It was all about heart. Logic was nowhere in the room.

Higher than our hearts is Pablo's: all three of us know Pablo wants to be home. In our bed, where he has slept since birth, where he has a view of his tree house in the back yard. With his dogs Chili and Beans. With his toys. Enveloped in the love of his family. Trust me, we don't even have to ask him.

Tomorrow morning, we will take Pablo home. Dr M and his colleague Dr Marcio and our case worker Patricia Rios arranged hospice care for Pablo. The woman who will lead our hospice is universally loved here at CHLA. We will meet her tomorrow and then she'll meet us at our home.

Two basic medical devices will be delivered to our home: oxygen and an I.V. machine that will drip morphine into Pablo's body. No meters, gauges or electronic gadgetry. Our focus is only on Pablo's comfort. He deserves to be without pain in his final days, no matter how many they may be. Pablo is a child. Children should not know pain. This child has known enough challenge, and has soldiered through it all.

Pablo has never complained. And if he had, who would blame him? Through chemo, surgery, radiation, endless appointments - Pablo has just sailed from all that crap straight on to happiness and smiles and fun.

I leave you with this image intentionally. Please hold up only your fondest, happiest Pablo pictures and memories. He deserves that too.

We ask that you pray for Pablo's comfort and serenity. No more fighting. That's all done. We have to elevate our game to get to where Pablo's at.

A week ago Pablo was hustling. He was in Lego camp four hours a day, then playing with Eli after everyone else left. We were riding bikes and running around and laughing a lot. He was playing with his growing collection of toy guns. He was singing inspired songs, making up the words off the top of his dome. He was recounting stories that he'd learned from Polly, from Jo Ann, from Grady, from me. He loves to pass along a story. No matter what the narrative is, Pablo tells it with his face pulled into a smile, hands punctuating in the air - a real raconteur.

All of this is wonderful and makes up the very kind of life we want for Pablo. And it's why it's impossibly sad and gut-wrenching seeing him lying in bed right now, with an oxygen tube wrapped round his head feeding air into his nose, doped up on Morphine, remarking that it's hard to breathe. Pablo is a person that causes those around him to gasp for air - and only cos he's always running around and having people chase him. Always because he's on a quest for fun. To see his breathing impaired - that doesn't compute. But here we are. There he is.

In terms of a medical update, there's not a lot to say. A number of things are up in the air right now, and we're going to relay only concrete information. I am happy to say that P received platelets and red blood today. And he's sleeping peacefully after a sleepless night.

Grady just arrived. When P wakes up and sees him, he's gonna be happy. He loves his big brother more than just about anything. And we love that.

Pablo was admitted to CHLA 30 minutes ago. We are on 4 West, our home away from home. It's been a few months since we last stepped foot up here, so it was a bit of an odd homecoming when we bum-rushed our friends who run the joint.

Of course they knew we were coming cos our other friends in the ER called and told them.

If my mind serves me (and I'm not so sure it does), today is our first double-back in the entire 13 month run. We went home from the ER, as I mentioned in the previous post. 15 minutes after our return, P and I went downstairs to get ready for bed. He put on his blue camouflage dinosaur jammies (they are ill fitting since he's growing so fast), and we cruised into his bathroom to brush his teeth. As he was rinsing, he began to cough heartily, and persistently. A blood clot came out. He started to cry, and continued to spit up more blood. Thankfully, the second round was basic blood + mucous. Jo Ann rushed down, and picked him up and took him to bed. He said he felt fine, and she wanted to get him to sleep.

Thing is, his coughing would not slow down. And he started to call out pain in his chest and in the back of his right lung. Jo Ann told me to call the CHLA on-call oncologist, and minutes later, she was on with him. He instructed us to come back immediately.

Grady and Patricia helped gather our hospital essentials as Jo Ann and I changed out of our pajamas and got dressed again. The car flew through the streets. Pablo was crying and moaning the whole way here. The pain in his body did not let up. As we pulled into the ER entrance on Vermont Avenue, I heard Pablo's voice from the back seat. 'I've never felt this way Mommy,' he said.

Moments later we were inside the ER, back in the same room, with the same nurse and the same doc.

Minutes after he and Jo Ann laid downl, Pablo said his tummy hurt. I grabbed a kidney-shaped bin, and Jo Ann turned Pablo's body toward me as I thrust the bin under his chin. A massive wave of stuff came up - some on my hands and legs and a lot on the floor. At least half of it was blood. The ER doc walked in just as this was going down.

Inside I freaked the f*** out. I looked at Jo Ann. Her eyes locked into mine. Her look was telling me to hold on, to hold strong, to breathe. We've gotten good at this non-verbal communication. She continued to hold Pablo in her lap, and continued to comfort him and soothe him.

That scenario was our one-way ticket to the floor, as they say around here.

And the floor is where we'll be until we can figure our way out of this maze. It's another maze and we will find a way out. There is no way we won't. Pablo is a wonderful and wondrous guide through any curves that life has to offer. Look where he's taken us so far. The dude knows what's up.

Tonight, both Jo Ann and I are sleeping here. There's no way for one of us to be at home, away from Pablo.

Wednesday, June 24, 2009

We are back at the corner of Sunset + Vermont. I wish I could tell you we're here catching a Red Line train, or climbing the hill at the Frank Lloyd Wright-designed Hollyhock House. I wish I could tell you we're here cos Pablo forgot his favorite book when we were here yesterday. I wish I wasn't tapping my thumbs on my Blackberry, inside a cramped exam room in the CHLA ER. But I am. And wishing won't do me no good.

We're here because Pablo got fevered up this afternoon. That, together with the fact that P woke this morning coughing and clearing his throat persistently, is a one-way ticket to this oft-visited address.

The X-ray showed roughly 25% more fluid in Pablo's right lung. Jo Ann and I are pretty good at spying the X-ray monitors. We generally know what we're looking for, in broad strokes. Tonight, we nudged our way into the tech room in the radiology lab, and the tech brought up the images on his black and white monitor. It was evident to us that the foggy fluid image was covering well over half the right lung. Yesterday and three weeks ago it was clouding well under half the lung. More than half is easy to see, and it is an easy culprit for our little boy's coughing and unease.

On the way here Jo Ann wondered aloud if the coughing could be a cold. I don't recall responding. But I know I laughed inside, diverting my mind with thoughts of a cold, or summertime sports injury, measles, a burn (I had one when I was his age), or a plain old broken arm from falling out of a tree house. All of those diagnoses were falling out of a mental file labeled 'Not A Big Deal.' That file is growing, and it's located between my ears.

It would be shocking if Jo Ann and I hadn't thought about or talked about every possible way in which everything else in life - any kooky / krazee thing life could throw at a person, a family, a community - is not a big deal compared to the severity and longevity of Pablo's fight with this double-crossing disease.

I'm not sure that we feel double-crossed. As we sit here in our cramped ER room, we are breathing breaths of intention, looking at one another with hopeful eyes, and retaining an air of confidence and forward momentum. Those are the only things that matter. How many times I've written such a thing on this blog, I don't know. But it's never not true.

Pablo's I.V. antibiotic is finished. We're outta here. This dude wants to fall out and he wants to do it in Mommy + Papa's bed. That's one of his fave spots in the world. And it's certainly ours.

The goal (to be confirmed first thing tomorrow morning) is to bump our chemo to tomorrow from Friday. Dr M is convinced that Pablo will be responsive to another round of chemo, as he was with the first one.

Tuesday, June 23, 2009

This morning, Pablo and I got to CHLA shortly before 8. We found our bed, dropped our bags, and got through registration, triage and X-ray by 8:24. In our world, this is something to be excited about. By 8:45, Pablo's port was accessed, and his blood drawn and on its way to the lab somewhere in the hospital. We put his sheets from home on the bed, and turned on Jo Ann's computer so P could watch a movie. Jo Ann arrived minutes later. We were getting settled in, ready for a long day of chemo. Jo Ann asked what I'd seen on the X-ray screen (these things are all digital now). I told her it was hard to tell if there was a variance in the size on the monitor. We sat and waited for our nurse to tell us Dr Mascarenhas was ready to see Pablo.

A few minutes later, we were walking down the hallway. We were assigned to an exam room we haven't been in since the earliest of days. I had a good feeling about that. Most of the bad news we've gotten has occurred in one or two rooms at the other end of the clinic. This room, I thought, is clean. Dr M walked in. He started in his usual way—'I looked at the X-rays and...' My heart sank—I wasn't sure I was ready for the rest of that sentence. Thankfully, he didn't stop in the middle of the story. He continued on, 'and the tumor on the left side has shrunk around 50%.'

Jo Ann screamed. It was a joyous scream, I can assure you. I knelt down in front of Pablo and hugged him. He was smiling, ear to ear, but he didn't hug me back. His smile was one of 'Wow, Mommy's going crazy and she's happy.' It was cute. A minute later, it hit him. And he kept smiling.

After the smiling and screaming, Dr M went on to say that there's still a bit of fluid on the right side. The tumor isn't visible in an X-ray, due to the fluid, but a reduction in the fluid is evidence of shrinkage. We'll take it. When it comes to good news, we don't need to be precise about it. Good is good is good. F it!

One other big chunk of goodness is that P's platelets aren't quite high enough today for chemo. So we got our Tuesday back. We got to head outta there after only one hour. We got to go out into the world, into the sun and cool, fresh air, and celebrate this great news. Chemo's been rescheduled for Friday.

The first stop on the great news train was Toys R Us. The nurses had sung happy birthday to Pablo, and gave him a Captain Jack Sparrow key chain, and a Toys R Us gift card. So, naturally, P wanted to head straight there to spend it. Wise boy! He got a marshmallow blaster, a giant Playmobil set and a couple Playmobil Viking dudes. And the gift card was for $5. Good thing he was accompanied by Mommy and Nana.

Sunday, June 21, 2009

All of Pablo's birthday gifts made him happy. Saying 'I'm six!' makes him even happier. But a fistfulla $2 bills shot him from Silverlake to outer space. We're pretty sure the only $2 P had ever seen was the one Polly gave him that is (we think) in his piggy bank. There's something about seeing a stack of these rare specimens that's appealing to a kid. When he opened the card from Grandpa and Katie his eyes lit up, his smile lit up, and his hands couldn't get enough of those things. We're positive he's gonna be showing off those 10 pieces of crisp currency all week.

More pics later...including the four-foot pinata in the shape of Batman/Christian Bale from Billy and Shirley, and the hay bale shooting target and corresponding BB gun in the back yard - from Jo Ann's dad Harry, who has a hunting gun collection to rival the Texas National Guard.

A lot has changed since June 21 2003. For a start Pablo isn't here! The little dude jumped at the chance to do a sleepover at his grandparents' hotel downtown. So, this is officially the first birthday he hasn't woken up with us. It's fine by us—we're kickin it, sampling the bday cupcakes in bed. (Seriously.) We could never do that in front of Pablo or Grady, cos it's against the rules to eat on this floor of our house. But with the kiddies away...who needs rulezzzz?

When P left last night, something about him actually seemed older. It wasn't his voice. His voice has always been pretty deep. It's his face, which looks more developed, and the right front tooth that's nearly halfway in. And when I held him in my arms yesterday he felt lankier. If I remember Tuesday's triage check-in correctly, P is now 113 or 114cm, so he is getting bigger. Anyway, it was cool to see something different in him yesterday, the day before his official year-flipping.

I also want to wish all of you baby daddies out there a happy father's day. Being a dad is the best thing that ever happened to me. Any dad I've ever spoken to about this agrees. To be frank, I am still kind of shocked about being a papa—like, 'Do they know who they gave the keys to?' I've never felt like I didn't know what to do. It's just that I still feel like a teenager, and I can't believe how lucky I've gotten in my life—to be able to feel (and often act) like a kid, and actually be an adult, responsible for a pair of young Earthlings.

Every day is a special day around here. I am not going to get real deep here (mostly cos I have to run to get a jug of coffee for our park expedition), but I will say that the combination of Pablo's sixth birthday and father's day magnifies the sweetness and the reality that we are in. Like every moment of every day for us, there is a magnified sense of preciousness, of fragility, of the importance of the small stuff. It'd be this way no matter what. But with the two highest holidays of the year (haha) laying over one another, we have a rare moment to look deeper. Today, really, is a total eclipse of the heart.

Saturday, June 20, 2009

Most guys in prison uniforms don't have handguns. Pablo must've worked out a sweet hush deal with the guards. Today is another feel-good day for P, and for that simple fact we are grateful, happy and breathing easy. Nana and Boo are here and did some good snuggling and hanging with P this morning. At the moment they are in Monrovia with Jo Ann, buying bday gifts for Pablo at an independent toy store. Pablo and I are headed to Velo Pasadena for a quick minute. We're all gonna meet up at the pride of Glendale—the Americana outdoor mall—to take in the child-friendly movie 'The Proposal.' I'm hoping we can take a walk around the Reservoir after dinner. It's another cool and gloomy day in LA. Most people don't like this weather, but it's my fave—especially when it comes to cycling or going outdoors with P.

By the way, Pablo borrowed a book from Dr Marsha Conner, his Chinese medicine doctor in Mt Washington. It's called 'Dumb Jokes For Smart Kids.' He's paging through it reciting jokes. He doesn't know how to read. He has memorized entire groups of jokes based on the corresponding illustrations. One page has an elephant with an umbrella. So he knows the joke is:

Q: What do you call an elephant umbrella?A: An umbrellaphant.

I never tire of watching Pablo just be Pablo.... It's the best job in the world....

Tomorrow is Pablo's sixth birthday. I guess that makes him 5.9999 years old today!

This is what I saw in my rearview mirror a few seconds ago. We made a deal: P got to bring his bag of wheat-free oatmeal cookies in the car and chow as many as he wanted on the way to Lego camp; I got to stop at Starbucks for a little pre-ride caffeine. Looks like P wanted to ring all the value outta the deal.

Our whole family will meet up later this morning at Scott + Helen + Eli's. They're throwing a camp-closing BBQ for lunch. Later tonight, Jo Ann's parents arrive from Houston.

And...on Sunday...we have a High Holiday to celebrate: PABLO'S SIXTH BIRTHDAY!!!!

Thursday, June 18, 2009

Eli's garage is youngster's play land. He's got a killer Pearl drum kit, guitars, a bass and amps. And this climbing wall that leads to a loft. This all makes the post-Lego Camp experience just as fun as the main event.

Scott and Helen hosted our baby shower at their home a little over six years ago. That was a few weeks before we met Pablo. As I type this, it's hitting me how profound it is to be here. How deep our community and close friendships are. How many years and days we've journeyed through; how many speed bumps we've rolled over; how many hills we've crested. Even when we are alone, our friends and our community at large are there, with us, cheering us on. When I say 'we' and 'our,' I mean all of us - in every direction, in every configuration.

Looking across the yard, there are a pair of center-latched French doors that lead into the garage. At our baby shower back in May 2003, my brother Scott, his wife Susan, and my then little niece Isabella stood in front of those doors. Francine took a photo of them. We have looked at that photo exactly a million times since then. It's in the iPhoto files on all our computers. I love that photo, I loved that day, and I love the memory it has preserved.

Eli is two years older than P, and has known him since he was born. Being that the baby shower took place at his residence, he celebrated the coming of his friend's birth along with tons of other friends and family. Eli treats P like a little brother. It's a different energy than Grady and P, because of the age proximity. Seeing these two guys - and Dorrie and Phil's son Isaac when he's here - playing and galavanting around is so simple and so sweet. I love it. We are in the midst of life, and I love it.

Sitting here in the back yard is so beautiful and peaceful. Giant trees shade me from the sun, bird song is coming from all directions and, best of all, I can hear P and Eli playing in the garage. Their little voices are wafting through the calm, quiet Bronson Canyon air. This is the reason people love Los Angeles.

It would be disingenuous if I did not give voice to the much smaller feeling inside me as all this playing and galavanting goes down. That feeling is an aching sadness that runs so deep inside me that I am crying as my thumbs tap the Blackberry letters that spell it. I want this playing and galavanting to last forever. I pray that it can and will.

The fact that I have to call upon the Universe with prayer is evidence of my dilemma. Thankfully, the sad part is the small part.

The moment in front of me is real, and what's in front of me is two boys having fun.

Wednesday, June 17, 2009

Pablove gets around.... Here's Sydney Crosby from the Pittsburgh Penguins with his cherished possession, the Stanley Cup. The Pablove-adorned man on the other side of the Cup is his agent, Jim Nice—the brother of Dangerbird head of radio promotion Steve Nice.

Today is Lego camp day number three. Pablo and his seven camp mates built more stuff with super exclusive Lego gears and motors and remote controls. The stuff they get to build with at camp is available only to high end Lego engineers and master builders. One of these days, I am going to try and get in on the camp. It looks so cool!

Monday 4:30 p.m.—Pablo at the beach in Santa Monica.... I think this was Dean's final photo of P before heading back to Milwaukee at 6 a.m. today. We've had a full day so far: Lego Camp, lunch, a short gun fight here at home...and now we're on our way to CHLA for a blood draw, X-ray and an exam/meeting with Dr M.

P and I are planning to do a bike ride after dinner, while Jo Ann and her lifelong friend Julie Cagelosi walk the dawgs round the reservoir.... Julie arrived from New Orleans at 11 p.m. last night.

Monday, June 15, 2009

Dean and I dropped Pablo at Lego camp today at 9:30 a.m. Lego camp is also known as Eli's living room in Bronson Canyon. Helen put together a great program—a professional Lego builder comes to the house every day this week, and guides Eli and seven friends through a Mies van der Rohe master class in plastic block building. It's every bit as cool as you think it is. I kind of wanted to hang out and take the class myself!Jo Ann very wisely told me to hang in the kitchen for a while when we got there. Pablo has been away from group activity for over a year, and he is definitely shy and removed in group settings. We want him to feel our presence in situations like that. We also want his social confidence and independence to build back up. These things take time. And consistency. Two things Pablo hasn't had much of for the past 13 months.

So Dean and I hung in the kitchen with Eli's parents Scott and Helen, and Isaac's mom Dorrie, and I peeked into the living room every couple minutes. The first time I looked, I saw Pablo sitting by himself, staring out the window. My heart shattered. My lungs stopped accepting air. I froze and at the same time wanted to run over and put my arms around him. Just then, Eli ran over and sat down in front of Pablo. My assessment of the situation was dead wrong: P and Eli were building a giant truck together. At the precise moment I looked in, Eli had run to the supply bin to grab some parts. Seeing Pablo's face light up as he and Eli continued building their vehicle was my cue to pop back into the kitchen. And to breathe again.

When we left, Dean and I both kissed Pablo goodbye. He asked when Mommy was coming over. He said goodbye. And he kept on building. I bet by Friday, he'll be back to the quick hug n kiss routine he built up to at the Walther School. Can't wait to see how this week goes.... It's damn exciting for us to shepherd Pablo back into an educational / social setting. Pablo is lucky to have a mommy as sweet and thoughtful as Jo Ann—she jumped on this camp idea the minute Helen mentioned it, knowing this week would be the ideal time for P to do a camp in terms of his immune function, and his recovery from the gnarly side effects of chemo.

¶ Sunday, we rode two-and-a-half laps round the Silverlake Reservoir. We were set to do four, but I was too tired after a brisk 40 mile ride earlier that morning. I had to break it to Pablo that my 37-year-old bones and lungs were tired. He wasn't too happy. But when I diverted his attention to all the Geronimo jumps he could do on the stone railing at the park, all turned out well. Plus, we were excited to have Mommy and Beans join us at the park when they made their way around the reservoir.Another snapshot from the park: Pablo loves chasing games. Is this something all boys like? I dunno, but I know my boy does. The saddest aspect of his diminished lung capacity was (can I say was?) his diminished ability to run and run and run and scream and scream and scream.

Yesterday at Silverlake Park, there was no evidence of lung impingement. Pablo invented a chase game to put all others to shame: he was a monster who chased me and made a scary monster grrrrrrrowl, and I rode my bike (with his connect bike attached), desperately trying to avoid his evil claws. All of this took place on the mushy, moist grass of the soccer field—not the easiest surface to ride a heavy vintage racing bike on. Pablo was out-of-his-mind excited. I took turns paying attention to what I was doing physically and letting Pablo's joy and reckless abandon seep into my heart. That was some good stuff, and I didn't want to miss the moment.

After playtime, we went to Malo for dinner. For years, this was our Sunday night jam. Since P's diet has gone essentially vegan n fish, we've shifted to mostly in-home dining. We haven't been at Malo for a family dinner in two months. We got crafty—brought baked corn chips for Pablo, and ordered him Soyrizo tacos on corn shells—and it worked like a charm. He'd never eaten either of those items, so it was 100% risk. It worked out so well that he actually tried—and loved—guacamole and my fave salsa for the first time.

Here are Dean's snapshots from our late Sunday afternoon jaunt. No captions needed. The shadow shot is Dean and Pablo.

The basic idea here is actually Pimp Pablo, but I couldn't tell if that was too racy a title? Here, Pablo's rocking pink Kanye West cyberpimp glasses, dressed in a desert camo button-up shirt, and petting his white kitty in a menacing manner, to show fools and would-be fools that he is nobody to be messed witt.

Strangely, it's a rare moment when our whole family is together with a fifth person on hand to snap a pic of us. Last night, on the front porch at Brian Aubert and Tracy Marcellino's place, was one of those rare moments. The back drop couldn't be more beautiful - looking west over Sunset Boulevard and the hills of Silverlake.

The man with cam in hand was uncle Dean. We were all happy cos it was Brian's bday, and we'd just had a nice hang with him and Tracy in their back yard. Within one second of arriving in the yard, Pablo invented a game - he stood on the brick edge of the reflection pond and jumped onto the wood deck. Of course P's game had to involve peril and suspense!Grady had so much fun that he stepped in a pile of dog doo and sullied his brand new polka-dotted Jordans.

This morning, we are at Mani's Bakery on Fairfax, about to lay into some vegan (and vegan-ish) brekkie. Then we're hitting a screening of 'Imagine That' across the street at The Grove.

Friday, June 12, 2009

Pablo woke up, put on his jailbird costume and gathered the five books in his 'Spiderwick Chronicles' collection. Without a word, he sat down at the coffee table and started reading—leafing through each book, a page at a time—with a very studious and serious look on his face. The scene was too precious to keep to myself. I had to share it here. To see a little boy compelled to experience books, even before he knows how to read, is incredible. He's our jailbird bookworm.

Uncle Dean is in the air, on his way to LA from Milwaukee. He doesn't know it, but once he arrives, we're going to take him to Descanso Gardens for a bit of tranquility. Tonight or tomorrow, we're going to hit the other end of the spectrum—Pablo wants to see the new Eddie Murphy flick, 'Imagine That.' Looks like Nickelodeon's wall-to-wall advertising has been effective on our little consumer. He really likes the 'Queen of England' line in the commercial. We're up for seeing it—anything will be better than last weekend's movie misadventure, 'Land of the Lost.' We're still wondering how that movie ever got made.

Thursday, June 11, 2009

We're tucked away in the nicest corner stall of the CHLA Day Hospital. There's a great view. But we're not here for the gorgeous view of Silverlake, Echo Park and downtown. We're here for a blood transfusion - to put a pint of last Thursday's Oaks harvest into Pablo's heart + veins. The blood is ordered, and should be here shortly. Then our nurse, Anthony, will access P's port, and start the blood drip.

The next four hours will be spent here, with our southern view and another glorious (for me) cloud-filled June sky outside the window. Today, as always, we came prepared for the long haul. P brought five Lemony Snicket books to read (he pages through, studying the words, letters and occasional illustration). Jo Ann and I brought our copies of 'The Hobbit' - we are joining Grady on his summer reading list; this book, my least favorite of the three we're reading, is his choice as ice-breaker.

Last night, Peter took Grady to see 'Debacle,' a skateboarding movie that was screened at Nike's Montalban Theater in Hollywood. That's the same location that hosted the Livestrong event back in February. They had a good time eating popcorn and - unexpectedly - waiting a long time for the movie's skater star to cab it to the theater from the ER so he could introduce the flick. The dude seriously injured himself while skating yesterday afternoon. Guess Peter and Grady can't avoid being around people who hang out in hospitals!

OK, more later.... I better dive into Hobbitland. For me, this kinda literature is the equivalent of eating raw tomatoes or brussels sprouts. Ugh!

Wednesday, June 10, 2009

Check out Pablo and his jellyfish coin from the Long Beach Aquarium. He's happy as a clam after a day hanging with fish, blue frogs, sea spiders and sea dragons. He even learned that some animal poisons can be used to help, not hurt, humans—including one poison that's used in battling cancer.

Tuesday, June 9, 2009

The sun didn't come out today in our end of LA. It was kind of a gloomy day. Like many Angelenos, we bundle up on days like today. Go ahead, make fun of us—but it's such a novelty to wear a sweater in LA! Pablo wore two shirts and a sweater vest and a suit coat; he wanted to dress like one of the dudes on the cover of 'Lemony Snicket.' Bundled in our long sleeves we traveled to CHLA with long faces. Despite the lack of solar rays, we found the most nourishing warmth this afternoon, indoors, at the CHLA Oncology Clinic.

How did this happen? What's this about? Our warmth had to do with something far more significant than solar rays. Our warmth had to do with our hearts. Our warmth had to do with Dr Mascarenhas putting his stethoscope to Pablo's back, behind his right lung, and hearing breath! The sound of BREATH, breathing, inhaling, exhaling: that thing we all do whether we like chocolate or hate Sarah Palin or love Cleveland in November or agree on how GM should be bailed out.... No sound could make us happier than what Dr M heard through his rubber n metal contraption. I'm almost winded with excitement just typing this.

Last Thursday, Dr M heard nothing when he put his stethoscope on the same spot. The fluid in P's lung blocked the sound. This was the impetus for the new round of chemo that started Friday. We had to throw something at that tumor, to knock the pants off of it, to push it back to nothingness, where it came from. The chemo Pablo started on Friday is the last house on the block for him, in terms of chemotherapeutic treatment. So, you can see why today's development is so important.

Dr M hearing breath means—in all likelihood—that the chemo is knocking back the size of the tumor, and the fluid that's building up between the lung and the sac that contains the lung. I say probably because we have not done an X-ray or a scan to verify this. And we won't do an X-ray until next Tuesday. Why? Last Friday, Dr M proposed that if we heard breath today, we'd let the chemo continue kicking butt on the tumors. He said something along the lines of, 'I can wait another week for good news.' We agreed. It's the Zen approach. It's worked for us so far. You know that cos you've ALL chopped wood and carried water WITH US.

We owe all of you a huge THANKS for your daily three minute blasts of love + energy. Let's keep the operation in motion. It's WORKING....

John Silva, our friend and my longtime mentor, in the CHLA Blood Mobile last Thursday. His wife Shana Weiss was one of the organizers of the blood drive—another in a long string of loving and supportive actions they've sent our way since Pablo's diagnosis.

Last Thursday, our friends Shana Weiss, Mary Kay Patrick and Marilyn Parkin threw a blood drive at Pablo's new school, The Oaks. Even though Pablo won't start kindergarten until September, the Oaks is filled with his friends, our friends, and plenty of folks who are supporting Pablo prior to meeting him. Lots of Walther School kids populate the classrooms there, as does one adult Walther alumni: art teacher Marilyn, who's now full time at The Oaks. For a kid who has had more blood transfusions than ice cream cones in the past year, this is a hugely loving act. Pablo may need a pint this week, in fact. And even if he doesn't, the juice will be put to good use at CHLA.

The Oaks blood drive had an incredible turnout—as you will read in the newsletter update that Shana wrote. I'm always up for a reprint—saves me some typing time, which I need today, so I can go ride my bike before we leave for our 3 p.m. meeting with Dr M at CHLA!

Here's the deets:

Oaks Blood Drive Yields 50 Pints! A hearty thank you to everyone who participated in the Oaks Blood Drive this morning. With over 80 parents, faculty and staff members, we yielded over 50 pints of blood -- a gift that translates into a chance at life for nearly 150 preemie babies . . . and will all be used by Sunday night. In addition, we have 10 units set aside for Pablo to be used in his ongoing treatment. And given that the Red Cross charges $500 per pint, we have collectively contributed a gift to the hospital of $25,000. So thank you from the bottom of our hearts . . . and we hope to see you again in the Fall for our next Blood Drive.

We send a heartfelt jolt of gratitude and love to the trio of organizers, The Oaks administration and staff, and all those who got poked in the arm and donated their true blood.

Saturday, June 6, 2009

Thursday morning, I sat down with my laptop. For the first time in over a week, I wanted to write. There was a lot going on in the house, and I couldn't concentrate. I needed an audio force field. So I downloaded 'Van Halen II.' No idea why. That album just popped into my head. Within 20 seconds it was blaring on my speakers and my fingers were tapping as fast as Eddie Van Halen's in 'You're No Good.' When I hit the PUBLISH button, I felt lighter.

A few hours later, I walked into a house in Beverly Hills where we were meeting with a spiritual advisor we've come to like. A friend of his lets him use his home for meetings when he's in LA. I took my shoes off in the foyer and was escorted to the media room. In front of me stood a wood and Lucite display case. Inside the case: one of EVH's gonzo-striped guitars. Nothing surprises me any more. Jo Ann and I live in a world where energetic, social and advocacy connections guide us through our days. We don't question which way the light guides us. We just smile, and say 'thank you.'

Half an hour after I entered the house where one of my idols' guitars lives, Jo Ann and Pablo joined me. We had just come from meeting with Dr Mascarenhas in his sixth floor office at CHLA. Jo Ann and I went there to confirm our plan for Pablo's treatment. After three weeks of pondering and searching for options, we had decided on what we thought was our least favorite idea: to surgically remove the two tumors in P's lungs. Our shift came about for two reasons: 1) Dr Stein determined he could get the tumors out in one procedure, not the two he'd originally suggested (thereby reducing P's hospital stay from three weeks to one); 2) we found a handful of exciting, acceptable drugs to throw at P's cancer post-surgery. We were excited to run down this path that we'd been entirely closed to three weeks earlier. Time helped. And Jo Ann's incessant search for information and knowledge helped. Pablo's daily increase in strength, light and vitality was the wind in our sails. Changing P to an incredibly healthy diet, with carefully selected fish and meats thrown in, was the wind in Pablo's sails.

30 minutes into our meeting with Dr M, we mentioned something that Pablo had told me that morning. We were playing in our bed, running around, jumping and screaming. Suddenly, he stopped, shifting from playful extrovert to inheld and protective. When I asked what was up, he said he couldn't breathe when he laid flat on his back. He laid back, inhaled deeply and looked pained and scared—the way a human looks when they can't get enough air. I grabbed his hands, pulled him up and hugged him. A moment later, we were playing again. Not wanting to frighten him, I just reignited the play. Didn't know what else to do. I knew something was up. His coughing had been going on for two days. Jo Ann and I talked about it constantly when he wasn't around. We'd each seen him stop running to catch his breath. He'd asked Grady if they could play something that wasn't a chase game. Francine noticed him stop to catch his breath when he was running with the kids at her barbecue.

Dr M asked us to get Pablo to CHLA right away. We called Polly, and she and Grady had him there in 10 minutes. We met them on the fourth floor of the clinic, in the radiology department. For the fourth or fifth time, Pablo stood in front of the X-ray lens and let his face fall into a glib, detached expression. Minutes later, Dr M popped out of a meeting upstairs and pulled up the images on his computer. He called Jo Ann to report what he'd seen: a considerable amount of fluid had built up in P's right lung. This was why he couldn't get fulls breaths when laying down. This is why his breathing has been shallower, and, perhaps, why he's been coughing constantly. In a general sense, the fluid restricts the lung's full potential, and causes less oxygen to be pumped into the blood, as well as a shorter breathing cycle. Such a simple bodily function that most of us never think about. Once restricted, it becomes the focus of all our attention.

The tumor in his lower right lung is not our only focus. The growth in his upper left lung is dangerously close to Pablo's airway.

The fluid build up, Dr M explained, was caused by the tumor pushing outward toward the sac that encapsulates the lung. A normal lung has fluid in this area, to lubricate the slide of the expanding lung against the sac. With the presence of a tumor nudging into this area, the body goes into overdrive, creating an overabundance of fluid. He believes there may be cancer cells in the fluid, which makes surgery impossible at this point. Imagine piercing a plastic bag filled with toxic water. Wouldn't be good. The cells could be spilled everywhere inside P's body.

As we learned this info on Thursday afternoon, we also learned that more chemo was the only option we had. Chemo is the only agent known to reduce the size of a tumor and the fluid bonanza it creates. If the chemo is successful, surgery will be possible.

So, Friday morning we arrived at CHLA at 9:30 a.m. and settled into our old routine. We were there until 5:30 p.m., a solid eight hours in a dark corner of a ward room where only hanging sheets shielded us from the three other families in earshot. When we arrived, we met with Dr M. He explained to Pablo what was going on inside his body. Pablo listened intently. I could tell he comprehended everything Dr M said. He's grown up at CHLA, of course he did. It's his body at the center of all this attention—of course he understood.

The chemo was tough on Pablo. Each of the two drugs he received has side effects. They all do. But these two have pretty specific and severe effects. Pablo slept through the last half of his infusions and immediately upon waking he began retching, vomiting, and retching some more. His head hurt. Imagine your child, any child, being injected with a liquid that could inflict serious pain on him, screaming 'My head hurts.' And the machine keeps pumping it into his body. Because it has to, in order to reverse that other dastardly effect going on out of sight, inside his body. I was scared. He was scared. Jo Ann was in a Zen state, holding P in her arms. Thank God. One of us had to be. And then more retching, more vomiting. More pain in Pablo's head.

That's the scene that we brought home. Through the night, this scene played over and over. Same thing today. Pablo is not himself. He won't be until the darkness of this drug lifts, and the sunlight of its promise basks on Pablo. We know this is possible. It's happened many times over the past 13 months. I can't remember it ever being this bad. This is the reason we never wanted to do chemo ever again. But I also can't remember Pablo needing chemo in such a direct, profound way. Today, our target is the two tumors in his lungs. They are taking his breath away. This is something we can see. When I think about it, I feel choked in my own lungs. That's a game changer. And our game against cancer has gone from a wide field of strategic options to a block + tackle scenario. To put a finer point on it: one block...and one tackle.

On a side note: every time I see someone smoking, I get mad and a little sick to my stomach. Every time I see someone smoking, I think the same thing: does that person think they are immune? And then I let it go. It's not my job....

We need your continued prayers. We need your light. We need your heart focus on our little boy. We assure you that we'll be there for you when we are able to be there for you. Our hearts are filled with gratitude for all that you have done for Pablo and our family.

Thursday, June 4, 2009

Dave Cooley gave us a bottle of the world's best bubbles. This pic proves the 'best' part. Pablo and I have developed a nightly ritual we call Crazy Bubble Bath or 'ceeb' for short. Don't know what's in these bubbles, but they are relaxing, they last forever, and they swallow up all our Lego guys....

Our house has become a repository for acronyms: combinations of drugs whose initial letters have been arranged by the national oncology board to create some sort of a memorable name; federal drug codes, which are used when the actual product name is too difficult to pronounce (to wit: IPILIMUMAB and CIXUTUMUMAB); and my fave, RAD-001, which is the a/k/a for Affinitor, a name most people with a fully developed tongue are not challenged to pronounce.

Other terms swimming around the airwaves at our house: stereotactic radiosurgery; radiofrequency ablation; PTEN pathways; PPAR meds; a viral therapy that shares a name with a British beer (Newcastle), was developed in Hungary (Hungary?) and is being used to great effect at an institute in Isreal; differentiation, dedifferentiation, pro-differentiation, phyto differentiation; and heaps of amazing facts about how cells behave when confronted by agents that promote anti-inflammation and anti-angiogenesis. We've even been schooled on the black market for cancer drugs and the vast differences between Phase I, II and III clinical trials. We've become well acquainted with the term 'first in human' trials—as in, 'the last person who got this drug was a rat.'

Most of all, we talk about treating Pablo's disease on four different fronts: physical, spiritual, nutritional, and medical. Up to about seven weeks ago, we relied heavily on the medical aspect. At this moment, Pablo has not had any medicine injected into his body for weeks. And he is stronger and more active and happier than he was even before his diagnosis. We are strengthening P's temple—and the city walls that surround it—so he can endure the next phase of this battle. This four-front battle plan is working. It combines all that we truly believe in, all that we practice (or have practiced) in our lives here on Redesdale Avenue. It makes sense to treat Pablo's cancer in a whole, rather than partial, way. Believing that the body can cure the body is a harmonious, simple notion. So simple, so devoid of medi-techno babble that it is viewed with suspicion in today's society. Some days, Jo Ann drags me back to this world, kicking and screaming. That's when I want to run for the false security of a medical-only plan.

We're putting the finishing touches on the plan for the next phase. Not ready to talk about it here.

Jo Ann and I have mini conversations throughout each day, discussing this theory or that...probabilities...the latest update we've received from Dr M, Pablo's surgeon Dr Stein, or one of the growing team of doctors we are consulting with. The other morning the phone rang and it was a doctor from the National Cancer Institute in Bethesda. She heard about Pablo and had a treatment idea for him. While Jo Ann had her on the phone, she ran all our options by her, gleaning valuable perspective to throw into the mix in our discussions with Dr M. You can't imagine the power of the team we've assembled. Jo Ann, being an executive producer by profession, is in her element in this environment. Charged with her most challenging and most meaningful task ever—saving her son's life—she is spinning 50 plates at a time, getting answers to questions that haven't yet been asked, receiving calls from secret area codes regarding drugs that are far from their eight-page ad spread in People magazine.

¶ This morning, the phone rang: it was a collection agency. We're late paying a $250 invoice at CHLA—an invoice that Jo Ann has intentionally not paid as the hospital and our insurance company sort out details relating to our yearly deductible. I'm laughing as I write this. 250 bucks? At this point, Pablo must be the Million Dollar Kid. I haven't added up the cost of his treatment, but it must be well over a mill. I dig that somebody in the accounting department pushed a piece of paper into a file. Totally. But, still, with the pressure of Pablo's life on our minds and in our hearts, laughing at that phone call is the lightest way to look at it and let it go.

¶ The kid didn't flinch when we eradicated sugar, dairy and wheat from his diet. He totally gets it. He also didn't flinch when he had to start swallowing four pills every morning—whole food supplements whose chief aim is to get his body back in line with itself so it can kick his tumors in the teeth. Kind of brings a new level to 'I did it—all by myself!—that excited proclamation kids all over the world say every day. P and Jo Ann just figured out a way to integrate one of his fave toys into the exercise. Here's what they do: P puts the pill on his tongue, swallows some water, and Jo Ann counts off, clicking the trigger of P's silver cowboy pistol until the pill goes down. Pablo being the offspring of two fairly competitive people, he tries to best his own trigger click record as each new pill hits his tongue. It's hilarious to watch this. And it works, so it's a humorous miracle. No prophet in history has mixed humor with miracles. Wait—does George Burns playing God in a movie count?